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Kaiser
rejects costly treatment for sick children
The HMO's experts say it shouldn't pay for what it calls risky,
unproven
procedure.
By Cynthia Hubert -- Bee Staff Writer
Published 2:15 a.m. PDT Saturday, June 8, 2002
An Amador County couple whose three youngsters suffer from a fatal
genetic disorder have lost the first round of their battle to obtain a
costly treatment that could save two of the children.

A panel of medical specialists from Kaiser
Permanente has ruled against
John and Alicia Bennett's request for insurance coverage for
transplanting
healthy umbilical cord cells into their sons Hunter, 4, and Tommy, 2.

The boys and their sister, Ciara, 6, suffer from a
rare condition known
as Sanfilippo syndrome, which causes progressive damage to the heart,
bones,
joints and respiratory and central nervous systems. It is usually fatal
by age 13.

Ciara's condition is too far advanced to benefit
from treatment, and
the only hope for the boys may be the transplant, which costs about
$600,000
per child. The procedure has been performed at Duke University on only
two youngsters with Sanfilippo syndrome.

Both of those patients appear to be doing well,
but it is unclear whether
the treatment offers a cure, the physician who performed the procedures
recently told The Bee.

The Bennetts, whose story appeared in The Bee on
May 29, have been frantically
pursuing transplants for Hunter and Tommy. With the help of family and
friends, they have established a foundation in their children's name
and
raised thousands of dollars for travel, housing and food during the six
months they would have to spend in North Carolina.

But the panel of Kaiser genetics specialists that
has been studying
the case recommended this week against insurance coverage for the
procedures,
spokesman Jeff Hausman confirmed.

Hausman said the panel considered various factors,
including relatively
high risks of death and complications from the procedure, and the fact
that it is unproved in Sanfilippo patients.

The case now will be considered by a second Kaiser
medical committee,
which Hausman said would need compelling reasons to override the first
panel's ruling.

The Bennetts plan to appeal to the California
Department of Managed
Health Care, which has the authority to decide whether an independent
group
of physicians should evaluate denials of HMO coverage. If such a panel
were to decide that Kaiser must pay for the procedures, the company
would
be bound by state law to do so.

"We have tremendous sympathy for this family,"
Hausman said. "The panel's
decision was not a business decision. It was based on what these
specialists
believe to be in the best interests of the children."

In the meantime, John and Alicia Bennett face a
wrenching decision.
The family has enough funds to begin preliminary testing for a
transplant
for one child, Alicia Bennett said.

"But who do we choose? Hunter, who doesn't have
much time left, or Tommy,
who stands the best chance for improvement?

"We shouldn't have to make this kind of decision."

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Donations may be mailed to Bennett Children's Foundation, P.O. Box
1826, Jackson, CA 95642. The Bennetts can be reached at
ciaras_foundation@yahoo.com.
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